Tuesday, August 13, 2013

The start of goodness

An Internal reorg

I came to an uncomfortable realization that these past few months most of my thoughts are centered on work. 

It’s not just that my work day is long and intense (which it is).

But that I carry it in my mind everywhere.
Its how I define a good day or a bad day and my self-worth.

It only changes when we are in crisis ( like Crohn’s)

I am trying to change this
Every day as I walk into the house.

I visualize  mentally put down the work day along with my laptop.

When we are fully engaged in R -OMG what a difference in him

He is just as autistic (as he always was).

It’s just that he is engaged and autistic, which is the other realization that DH and I have come to

that R is ...

Growing up Autistic

 After so much therapy( 6 years ) - he is growing up 100% autistic.

All the therapy has been totally worth it as its brought about engagement and communication  but R is still fully autistic

One of his bedtime poems is by Edgar Allan Poe

A lines makes me so sad is

“And all I loved, I loved alone”

It makes me  wonder if that is what the experience of being Autistic in a world of neurotypicals must be like.

Not having anyone who finds interesting what you find interesting.

Like even when DH and I watch TV - I get really mad, when he multitasks - because when something funny or stupid happens - I want to look across at him and I want him to acknowledge my eye roll.

( we are watching Grey's Anatomy right now and trust me,drippy Meredith Grey and her sappy love are giving us plenty of opportunity to roll eyes)

His interests are just so peculiar but we try to be interested in them  and build on all of them

For instance he is enamored of the conductors and their batons

DH orders a baton on ebay and I think R will pass out with excitement

But I make sing songs and make him conduct me

Another huge interest is going up and down elevators  and taking photos of the numbers.

so since 0 is missing in the floor, I take a photo of his hand that he shapes into a circle. So the series is complete

Or having a same size can of Fanta( which he will never drink) , next to the can of the Sprite( which he loves)

Or the pleasures of trying to create the scenes that he has seen in a show

But we try and see that we are with him in these things so exciting to him

Naughtiness & Spontaneity

Ever since school ended ( even though he works around 30 hours a week atleast between tutoring and therapy) , he has so much more energy.

Unfortunately some of this energy is getting used for evil  :-)

Twice this month he ran away at our fitness club

I usually designate a naughty chair and make him sit on it for 5 minutes or give him consequence like no elevators ( his current obsession)

 He weeps repentantly and is very very sorry but he somehow still cannot resist himself.

What is truly incredible and a great gift is that now he has started to plot his crimes

For instance he loves to buy apps and games from I tunes –

Since I refuse to buy the expi ones an – he makes me buy him a cheap app from ITunes ( like 99 cents) and then while the password is in there, he takes away the iPad and then buys the expi ones .
This weekend we brought $45 worth of apps

While this is truly terrible, we could not be more proud.

Same with his eye medicine. Since he has a lazy eye- the strong one needs a patch/atropine. He found and hid both

Once I explained that his weak eye would keep getting weaker and weaker unless he put on at least one of them – he went straight to his hiding place (downstairs dustbin, very bottom, he had added a lot of paper in the trash to “bury” the meds)

And he asks to do things

Like Bake cupcakes
Color and decorate same cupcakes ( these activities would have been impossible a couple of years  ago )

But there are still things we need to work on. We get to visit some dear friends who have darling children  and find that as soon as R is tired - he has a hard time interacting with peers

Spontaneous Speech

I love that R is going a little bit better in terms of chatting.

The other day I told him to write an email to Miss Gypsi

Here is what he wrote
  • Knoxville
  • Tennessee
  • Bakery
  • We go to McDonalds
  • Oak Ridge
  • Mother
  • We go to target
  • Cheese
This most peculiar email is of course quite explicit to Miss G and me as he is remembering all the things he did with her ( "Cheese" is a mystery, Mother is related to when he met Miss G's mother and made Easter eggs with her )

Homeschooling start

Summer ends at the end of this month - but every year and we need to officially start with homeschooling

We are busy trying to design the curriculum for R 3rd Grade Therapy classroom.

This is not as easy as you would think !

The start of goodness
Despite so many things to the contrary, I am starting to feel a certain contentedness in life.
Everything about me -the contentment in my life, the feelings in my heart, how I come across to people, my home and how I see my whole world
It all  starts with how I feel inside
And the contended grateful feelings are starting to come.
I am remembering to ask fewer questions about the troubles we are facing ( insomnia, crohns etc ) and thinking more about our gifts
The more grateful I am, the more grateful I become
Gratitude to Gratitude always gives birth




Kris said...

You are such a good mom! R's little "crimes" were cracking me up!!

Yuji said...

Haha, R's naughtiness is very clever!

"Not having anyone who finds interesting what you find interesting." I try to show interest in things my son is interested in, though I wonder if he can detect that I'm not truly interested, at least, not in the same way he is. But I try... I don't want him to feel alone in his interests.

Good luck with planning out the home schooling.

May your contendeness continue...

robin said...

How creative R is hiding his patch/meds on the bottom of the trash and sneak buying the apps!

When I worked full-time, it was difficult to turn off my thoughts after leaving work so I had to have a pretend box in my mind where I put all those thoughts inside when I left work and then the next morning, I opened that invisible box, took out those same thoughts and started the new day. It worked well for me but I remember the challenge separating the highs/lows of my workday from the rest of the day at home. Good luck feeling more content. :)

Trish said...

I so love you and R, K! Your posts are always a reminder to me to stop and examine how I have been spending my time and energy and refocus on what is most important to me.

I can relate to wanting people who share my interests. It is like heaven when you find one!

Also, you said: "But there are still things we need to work on. We get to visit some dear friends who have darling children and find that as soon as R is tired - he has a hard time interacting with peers "

So do I and I am 43! But the difference between now and when I was younger is that I don't feel ashamed of myself for not being able to go as long as other people (most of the time) and I have developed ways to communicate to my friends that I care about them even though I need to say goodbye earlier than they would like sometimes.

Blessings to you all!

Gypsi said...

I teared up and Bryan cheered as I read outloud how R is "planning" his mischievous acts. How fantastic! What an amazing step forward! Just a few years ago, would you have thought it would happen? Hooray for a little planned naughtiness!

I adore seeing the photos of him making cupcakes! I wish I had been there to help!

Anonymous said...

Crohns isnt a crisis though. And FTM my daughter isnt neurotypical she has severe brain damage. Nonetheless I place no limits on Abby. She will be going to Woodland School when she is 3. For now, she is in a nursery mainstream one.


jazzygal said...

Oh, your R is such a clever boy! I remember way back when my guy learned to lie or give back cheek 'appropriately' ...way behind his peers.. I was caught between giving out to him and praising him!!

You are doing a wonderful job. Although i'm a stay at home mum I still have interests that take up my time and head space. Maybe work is one of the things that do that for you? Nothing wrong with taht... we all need something!

xx JAzzy

Looking for Blue Sky said...

Lots and lots of lovely news, and glad that you are feeling more contented too.

And I totally get the "naughtiness" thing - I love it when Smiley is naughty cos it's so hard for her! And she has this cheeky little grin when she is :)

Bonsky said...

Oh how I miss you KT but it is with much joy to read your blog entries. I totally understand what you are saying and during dark days it is so easy to be pulled into the abyss (even among those of us who usually choose to see the silver lining). I was so sorry to read about R's flair-up. Crohn's can be so miserable but I am sure it is something he will learn to live with and manage. Perhaps he will go into remission (like me!) and it will just become a dim memory. If not, R is such a delightful and strong little boy I have no doubt he will find a way to overcome any adversity and seek out what is beautiful in life. Just like his mum. Miss you. xoxoxo Bonsky

Bright Side of Life said...

I am so behind on my blog reading! :(
I can't tell you enough how awesome it is that R is being so mischievous, lovely lovely boy. Thinking of you. x

Tanya Savko said...

Lovely as always. So glad R is doing well ;) I love that photo of him in the naughty chair - the expression on his face is priceless. And Nigel loves Edgar Allen Poe too! Kindred spirits.

Anonymous said...

I enjoyed this post so much! R's "naughtiness" is awesome!! What a precious, precious boy he is.

Unknown said...

R sounds like an interesting little guy! I love your attitude, keep up the good work!

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